One Patient's Positive Perspectives

World Lupus Day – Lupus Awareness Blog No. 10 – YOUR blog or Facebook, YOUR pledge and Ten Minutes for Lupus

Today the featured blogger is YOU!  Today is World Lupus Day, so what can YOU do to help promote lupus awareness?  You are only one person, but a single voice can make an impact in spreading lupus awareness.  Lupus awareness saves lives.  So, take ten minutes to make a difference.


Share World Lupus Day with YOUR blog readers or YOUR Facebook followers by copying the four lines of information below into a post on YOUR blog, Facebook page or email to your friends and family:

Today is World Lupus Day!  Do you have just ten minutes for Lupus?

1. Learn about Lupus, an autoimmune disease that affects 1 out of every 150 people, spend 5 minutes clicking on the link to the Lupus Foundation of America to read Could You Have Lupus?

2. Please read & sign the Lupus Awareness Pledge on the official World Lupus Day Pledge page.

3. Then, tell your friends, loved ones, blog readers or Facebook friends what you learned about lupus by email or post.

Lupus Truth No. 10 – It is expensive to treat lupus!

The Diagnosis and Treatment of Lupus: Lupus can be an expensive disease!

The Lupus Foundation of America (LFA) reports that “the average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.”

However for those of us who are receiving the new biologic drugs, the real cost to our insurance companies is now many times greater than treatment with the standard medications included in the LFA’s estimates.

The average annual costs to a patient’s insurance company for monthly infusions of the new just-for-lupus drug Benlysta can run anywhere from $40,000 to over $100,000 per year!  The hospital where I get my Benlysta infusions bills my insurance company every month for somewhere between $8,000 and $11,000!

It can cost dramatically less over all for infusions given in a doctor’s office, but with generally much higher patient co-pays and much lower charges billed to the insurance company.  However, my insurance company will only pay when it is done at a hospital.

I continue to lobby for the logic of my insurance company agreeing to pay the same amount if infusions were to be given at my Rheumatologist’s office!

Costs of Treating Lupus

I have to admit that I am not noble enough to pay the increased cost to save my insurance company (a third-party administrator handling the self-funded health insurance for my employer) the difference.  Benlysta costs my employer MORE THAN MY SALARY every year!  (I have been brave enough to point this out to my employer, and still they keep me around!)

For this reason, unfortunately, many insurers and public funded health coverage plans around the world are not yet agreeing to pay for Benlysta.  It is simply a matter of the math, and the bottom line on the insurance coverage company’s corporate balance sheet!

We can only hope that enough insurance companies will pay for it, and that the demand is great enough that the costs of production can be reduced over time.  If it is successful financially for the drug company, it may in turn become less expensive, and eventually become more affordable for patients who need it.

To learn more about this the costs of lupus medications, please read my post from World Lupus Day 2012 on  May 10, 2012.

Plan to POP — Put on PurpleNEXT Friday for Lupus May 17th

Remember to organize your orchid accessories to get ready to “POP” — Put on Purple — for Lupus on Friday, May 17th!


Comments on: "Lupus Fact & Blog of the Day No. 10 – Ten Minutes for World Lupus Day!" (4)

  1. Biologic drugs are, as a whole, terribly problematic. The profit margins for biologics are so much smaller than for “chemical” drugs that the pharma companies are making a much riskier investment…not only will they recoup less money on biologic drugs before the patent expires, but if something goes wrong, they lose the billions they spent in R&D. (I’m a chemist-turned-sales-rep for a company that sells scientific information…so I’m familiar with big pharma!) Obviously, there’s no easy answer, but the inherent problems make progress and accessibility much more difficult for patients. Ultimately, pharma is a business and they are financially unstable now, and the US government is cutting funding to R&D, so the end result is less drug development and basic research.

    How’s that happy thought for a Wednesday morning!?!?!?!? 🙂

    • Jen: You are so accurate in your read on this issue. This is why we need to lobby both sides of the aisle in Washington to urge a non-partisan support for NIH funding for the important research to support new drug development and clinical trials.

      We need to 1) write letters and meet with senators and congressmen to lobby for NIH and other research funding, 2) participate in clinical trials of new drugs, 2) participate in Lupus walks to raise funds, 3) get involved with LFA chapters, and 4) blog with part of our goal to be encouraging others to get involved similarly. I have done all these things to try to make a difference!

      I love to tell the story of how the funding I lobbied for in Washington was granted and funded trials of drugs that I later received in Phase III clinical trials that led to a five-year near remission of my lupus. I was at a point where there was nothing left to take and everything available had failed to control my out of control CNS lupus and liver involvement. I was ready to go on disability and who knows how long I could have kept functioning.

      We need to never lose sight of how big the challenge is you described, and yet how every dollar spent in research trickles down to affect individual patients with lupus, even from benefit received in the trials of new drugs. It was life and lupus changing benefits I received. I am LIVING proof!

      Thanks for diving into these issues with me with your well spoken comments. I love it! LA

  2. The “cost” of lupus was shocking to me…it always just seems normal to spend $100+ a month on co-pays for doctors and prescriptions! But the truth is, most people don’t have a budget line item for “medical expenses” like that.. Thankfully, I have fabulous health insurance, but not everyone is nearly as fortunate…like in graduate school when I had a massive flare because the rheumatologist was considered out-of-network…

    • Jen: Thank you so much for your comment and feedback about the costs & insurance issues with Lupus. I have been dumbfounded by the massive costs for the new biologic drugs. Without insurance, they are just simply
      inaccessible to the average lupus patient. LA

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